Researchers at the AJ Drexel Autism Institute are developing a new screening tool to identify young children on the autism spectrum who might have been missed by toddler-age screening. We are inviting parents and educators of children ages 4-8 to participate.
What are the goals of the study?
We are creating a new screener for elementary-school children whose autism might still be diagnosed. This study is to test how well that screener is working, with children who have already been diagnosed with autism. We are seeking both parents AND EDUCATORS of children ages 4-8.
What will happen during the visit or online?
Participants will complete an online screening questionnaire (5 minutes). If they are eligible, someone from our research team will reach out to share the full study. The full study is a series of online questionnaires (45-60 minutes). Those who complete the full study will be compensated with $50.
How will this help families?
Many autistic children enter elementary school without their diagnosis being identified. This means that they do not get access to services and supports to which they would otherwise be legally entitled. The current project seeks to develop and implement new strategies for identifying children who may have been missed.
Researchers at Rutgers University are conducting a research study to evaluate a 10-session telehealth-based group therapy program.
What are the goals of the study?
The purpose of this study is to evaluate the feasibility, acceptability and effectiveness of an adapted telehealth Group Behavioral Activation Therapy (GBAT+) for autistic adults. GBAT+ is intended to help adults manage stress, anxiety, low moods, and anger.
What will happen during the visit or online?
Eligible people will be asked to complete questionnaires, 7 individual assessment visits, 5 brief check ins, and 10 group therapy sessions.
How will this help families?
Participants will receive 10 group therapy sessions and be compensated up to $345 for completion of assessments.
Many new parents/guardians of children first diagnosed with autism often feel anxiety about their child’s future. Many of these parents and guardians have lots of questions, such as, “Will my child be able to finish his education? Will my child be able to make friends? Will my child be able to live independently?” etc., which may possibly especially cause increased anxiety if these parents and guardians do not have the proper perceived social support that may be able to help them along the way. This in turn may affect the way these children are parented and raised and can make a great difference in the children’s lives.
What are the goals of the study?
To determine the relationship between perceived social support and future anxiety among Hispanic guardians of a child (2-18-years-old) diagnosed with autism spectrum disorder (ASD) residing in the United States
What will happen during the visit or online?
30-60 minutes of participation for the online assessment.
How will this help families?
Participants may benefit from being validated about their experiences with their child who has recently been diagnosed with ASD and will receive resources for support as needed.
This study is examining whether a non-invasive device called vagus nerve stimulator (VNS) improves symptoms related to intellectual and developmental disability (IDD) and/or autism spectrum disorder (ASD). VNS involves applying mild electrical stimulation through the skin around the neck. The vagus nerve sends communications between the brain and many parts of the body. It regulates many cognitive, emotional and bodily functions. VNS is FDA-approved for headaches in people 12-years and older.
What are the goals of the study?
The purpose of the study is to examine whether a device called vagus nerve stimulator (VNS) can help with autonomic symptoms commonly seen in developmental disabilities, including autism.
What will happen during the visit or online?
The participant will undergo several behavioral, neurocognitive, and EEG tests and attend regularly scheduled study appointments. The study duration will be between 9-11 months, which includes 1, 3, 6-month follow-up appointments.
How will this help families?
Possible improvements in some symptoms related to developmental disabilities and ASD with the use of VNS.
Emotion dysregulation (ED) in autism spectrum disorder (ASD) exacerbates social impairment, increases risk for psychiatric and behavioral problems, and often leads to polypharmacy, crisis interventions, and high rates of suicidality. Effective treatment of ED could greatly reduce morbidity and costs and significantly improve quality of life for individuals with ASD. The Emotion Dysregulation Inventory (EDI) is a caregiver report for children ages 6-17 years old that measures rapidly escalating, intense, and poorly regulated negative emotion and dysphoria. However, there are no existing self-report measures of ED validated in adolescents and adults with ASD. Currently, best practice for assessment of emotional and behavioral constructs in ASD is the use of multiple reporters, but this approach is more challenging for adults with ASD when a parent is no longer available or as involved in daily life. Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. The EDI-SR would be the first self-report of ED in ASD. It will be developed through a systematic item refinement process to ensure validity, thereby generating a new opportunity to incorporate patient-reported experiences and outcomes in an overlooked and growing group of adults with ASD. The availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD. Dr. Carla A. Mazefsky at the University of Pittsburgh is conducting this research study.
What are the goals of the study?
With this project, we aim to develop and validate a change-sensitive self-report measure of ED for adolescents and adults with ASD, called the Emotion Dysregulation Inventory-Self-Report (EDI-SR).
What will happen during the visit or online?
This study will occur entirely online and will take less than an hour for participants to complete. Participants will be able to pause and resume the questionnaires at any point. They will be paid $75 for completion of surveys. There are no travel requirements. Overall, it is low burden study. Participants may be invited back 4 weeks later for a single survey re-test for an additional $10.
How will this help families?
Although adults are the fastest growing segment of the ASD population, there has been limited treatment research focused on adults. Support for ED is a major unaddressed need for adults with ASD. Studies consistently identify ED as one of the top barriers in college, and adults with ASD and their parents identify mental health as a top priority for research. Therefore, the availability of validated self-report of ED is particularly crucial to address gaps in evidence-based treatment for adults with ASD.
Researchers in Baltimore, MD at Johns Hopkins University and Kennedy Krieger Institute are interested in investigating the underlying neural mechanisms associated with perceiving social interactions. We are recruiting adults (ages 18-35 years) with and without autism. Participation in this study includes a 90–120-minute MRI scan, a 10-minute recall task, a 30-minute IQ assessment, and six questionnaires. Participants with autism will also be asked to complete a 1-hour interview. Participants will be compensated with a $60 VISA gift card at the end of their research appointment.
What are the goals of the study?
The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.
What will happen during the visit or online?
Completion of a 90-120-minute MRI scan, brief questionnaires, 10-minute recall task and 30-minute IQ assessment
How will this help families?
We are investigating the neural mechanisms underlying perceptions of social interactions which will enable researchers to develop better informed therapies and trainings focused on social skills acquisition
A nursing PhD student at Vanderbilt University is looking for mothers of children with Autism Spectrum Disorder to share their experiences they had in feeding their child at the ages of 0-12 months. Feeding difficulties have been identified in older children with autism but few studies have looked at the feeding difficulties children with autism have before the age of 2 years old. Identifying infant feeding difficulties in autism may help with surveillance for earlier diagnosis and to better support mothers who are experiencing difficulties feeding their infant.
What are the goals of the study?
The purpose of this study is to investigate the feeding difficulties of infants who are later diagnosed with autism compared to their neurotypical sibling to identify any feeding characteristics that would warrant increased monitoring for autism in infancy.
What will happen during the visit or online?
One 30-45 minute online interview with a follow-up phone call or email if any additional information or clarification is needed regarding the information obtained in the interview. Participants will receive a $25 gift card for their time.
How will this help families?
This study may help inform better ways primary care providers (PCPs) ask questions at well child visits to identify infants that are experiencing feeding difficulties, improve PCP surveillance for neurodevelopmental delays in infants by assessing feeding, and improve PCP support for mothers experiencing difficulty feeding their infants.
The goal of this project is to establish how our current professional understanding of autism matches with and/or clashes with social media depictions of autism, so that (1) clinicians understand how online experiences might impact their patients’ conceptions about autism, and perhaps themselves, and so that (2) consumers of social media have guidance as they seek information. The study team is made up of Seaver Autism Center researchers, and we decided to put together this project after hearing from our participants and seeing for ourselves the wide range of autism-related content on TikTok.
What are the goals of the study?
We are looking into how people feel about current social media perceptions of Autism. Everyone’s feeds are different and everyone’s relationship with ASD is different, so we want to gather information from people with different perspectives and report back so everyone can enjoy their feeds with a little more big-picture understanding of the strengths and dangers of this content. We also want to have autism professionals weigh in on autism symptoms mentioned in top-performing videos, so the general public can have some guidance on what symptoms are more or less related to autism.
What will happen during the visit or online?
You will fill out an anonymous survey that will take anywhere between 2 and 10 minutes.
How will this help families?
Representation is so important. With over a billion users worldwide, TikTok has a tremendous impact on the way outsiders and people in the autism community are thinking about autism. The study team hopes that this study can provide more context and guidance for content consumers.
This study, conducted by researchers at the University of Washington, aims to redesign and pilot test an evidence-based family intervention (RUBI) for autism and behaviors that interfere with quality of life and self-determination in partnership with autistic adults, their caregivers, and their providers to ensure that the redesigned intervention is appropriate and effective for this community. We believe this study is important because autistic adults and their families are currently the most underserved population of autistic individuals. Additionally, the Autistic Self Advocacy Network recently called for increased work to help autistic adults with challenging behaviors and their supporters. We hope that this study can help make progress toward meeting this need for the autistic community.
What are the goals of the study?
In partnership with autistic individuals, their caregivers, and their providers, we hope to redesign an intervention for families of adults with autism and behaviors that interfere with their quality of life. We also hope to test the redesign intervention with ten families to ensure the redesigned intervention is feasible and appropriate for families.
What will happen during the visit or online?
There are two phases to this study:
For Phase 1, we are looking to recruit autistic adults, caregivers of autistic adults, and providers who service autistic adults. Focus group members will be asked to review materials about an established intervention for families of autistic children and answer questions in a 2 hour focus group regarding the applicability of the intervention for adults and suggestions for improving fit with families of autistic adults. Participants in Phase 1 will also be asked to fill out short surveys about the intervention during the focus groups. Participants will be compensated $100 for participating in focus groups.
For Phase 2, we are looking to recruit autistic adults and their caregivers to pilot the redesigned intervention. Families will be asked to attend 8-10 weeks of intervention (1 hour/week) at a time that is convenient for them. They will also be asked to fill out surveys about themselves and the intervention 4 times throughout the intervention. Participants will each be compensated $25 for each set of surveys.
How will this help families?
Currently, autistic adults and their families report having an extremely hard time accessing services. We hope that by redesigning a short term, evidence-based intervention for autistic adults with behaviors that interfere with their quality of life and their families, we can help expand access to this service and give autistic adults and their families tools to improve self-determination and quality of life.
An eye-tracking study to learn more about how Spanish-English bilingual adults with autism process language in real time. Participants will complete questionnaires, language proficiency tasks, and computer-based tasks — responding with button presses on the keyboard while their eye movements are tracked. The study will take one hour over one session. Given the large number of bilinguals both worldwide and in the US, this study aims to shed light on the important question of how language skills in ASD impacted by speaking another language.
What are the goals of the study?
We hope to better understand how Spanish-English bilingual adults with autism process language in real time.
What will happen during the visit or online?
Eye-tracking study
How will this help families?
Families affected by autism are often recommended by pediatricians, educators, and speech therapists to focus on the language of schooling and refrain from using the family’s home language. While bilinguals are underrepresented in ASD research, there is emerging evidence that exposure to a second language does not negatively impact language skills in children with ASD. This study hopes to shed more light on this question and help families make better informed decisions regarding raising their child with ASD in a bilingual environment (or not).
The purpose of the current study is to investigate whether adults with a diagnosis of autism tend to display more notable deficits in certain areas of competency measurement than others as measured by their performance on the MacArthur Competence Assessment Tool-Criminal Adjudication (MacCAT-CA) and the Judgment In Legal Contexts (JILC) Instrument, as well as look at the impact that theory of mind (as measured by the A-ToM [Adult-Theory of Mind] instrument) and measured intelligence (derived from previous IQ testing) may have on competence-related abilities. A trained doctoral student will facilitate study session procedures via Zoom. This study seeks to contribute to the scarce research on the unique effects of autism on competence-related abilities.
What are the goals of the study?
The researcher will explore whether this population displays a notable pattern in scores on the various facets of competency to stand trial. Deficits in theory of mind will be explored in terms of their relation to performance on competency measures. This information will collectively help inform the relationship between autism and competency to stand trial and perhaps be used to inform improved competency evaluations and procedures for this population in the future.
What will happen during the visit or online?
Results of previous IQ testing will be requested directly from the participant (no contact with their medical providers). If the participant is unable/unwilling to obtain and share this information with the researcher, the abbreviated version of the WASI-II will be administered to obtain an estimate of their IQ. On Zoom, participants will be administered the A-ToM, MacCAT-CA, and JILC. The A-ToM requires participants to view a series of videos and provide verbal responses to a series of prompts. The MacCAT-CA and JILC are both interview-style measures.
How will this help families?
The information collected in this study will help inform the relationship between autism and competency to stand trial and perhaps be used to inform improved competency evaluations and procedures for this population in the future.
This research study aims to find out more about adults with autism spectrum disorder, including how adults with autism think, how their brains work, and how these things change as they get older.
What are the goals of the study?
The main goal of the study is to understand the aging process in people with autism.
What will happen during the visit or online?
The study involves autism diagnostic evaluation at the SDSU Center for Autism, and a neuropsychological battery testing the individual’s memory, attention span, and other cognitive skills. Participants are also asked to undergo an MRI scan at the SDSU Imaging Center, which allows us to collect information about the brain anatomy and function. Because we are aiming to understand how people with autism age, we hope to repeat this evaluation in about 3-5 years, inviting participants to return for another scan and a set of assessments.
How will this help families?
Participants in this study report that they learn important information about their memory and other cognitive abilities from participating in the study. Broadly, the results of this study should help us understand how people with autism age – something that has not been studied nor well understood thus far.
